Saturday, October 26, 2013

Today's daily trip to McDonalds turned out to be an adventure in autism. About 3 minutes out of the driveway and down the road, the meltdown started. Try as I migh to divert my son's attention it persisted. When we came to a stop light at a very busy intersection I decided to take a longer route to a McD's further away to give him time to de-escalate. No such luck. I found myself pulling into the parking lot of a local shopping mall to be in a safe spot, off the highway. By now his voice is loud and there is banging on the windows, the dashboard, crying and screaming. I scan the parking lot visually for onlookers. I fear the day when someone, perhaps an officer of the law intervenes. I propose it might go something like this:(no disrespect intended toward our officers or first responders, somewhat tongue in cheek).

My son: no, no stop singing JoeyMe: I'm not singing. Let's go to McDs.Tap, tap, tap.I turn to my left to see a officer standing by the car.

Officer: roll down your window Mamm.Me: Officer, there really is no problem. Officer: Looks like a problem to me, what's going on here. Me: This is my son he's upset. Officer, yes that's obvious, Hey son, stop banging on the windows. Me: He has autism, he doesn't mean any harm. Officer: whoa, hey buddy stop hitting your Mom. "What is the problem for him?" Why is he like that?'Me: Hard to explain. I said something he didnt like and this is what we call a "meltdown". Officer: I saw you pull in off the highway. Are you in danger?Me: No in times like this we seek a safe place to wait out the meltdown. Obviuosly the road is not a safe place. Better to wait it out here. My son: 'A Clue, A Clue"....."I have to call Steve, I have to call Steve'. Officer: "What is he saying?" Why is he asking about clues? Is Steve his Dad? Me: No , the "A clue reference is from Blue's Clues...the children's show". "Steve was the host of the show". Officer: Why is he saying that though?Me: It has meaning to him. At this point in his life I do not know what that meaning is. Saying those things is his way of dealing with this distress he's feeling. It's tough though because I can't call Steve as you well know. Officer: "Well he can speak I would not have thought he had autism". Me: Some autistic children are verbal and some are not. Meaningful communication is difficult for them and for some impossible. Officer: 'Doesn't it hurt you when he punches you?" "Isn't there anything you can do about that?"Me: yes, of course it hurts. I'm only human. You try your best to either block the blows or get out of the way, again, no where to go when you are in a car, another reason we pull off the road. Officer: "Don't you have anyone to help you?" "I thought they gave aides to families with disabled children."

Me: No most of the time I have no one to help me and that is true for so many autism families. Funding is not there to pay for the assistance we might need and how often we need it. It's not a budgetary priority for our State or Nation. No one thinks of the futures these children and their families will face as they grow older. We would like to be independent and not have to ask for help now so that when he grows he too, can be independent.

Officer: "He seems to be calming down now." "Are you alright buddy?"

My son: "Yes, we have to go to McD's now, what's the holdup. You need to stop talking now. Let's go!

Me: "That's another thing our kids struggle with is social skills and manners. Please don't take an offense officer. He really is a good kid. Life is just much harder for him.

Officer: "Is there anything I can do?"

Me:"Yes, please tell your superiors about this experience you just had. Please tell them to sponsor training sessions for officers like yourself and our first responders so they know what autism can look like. Please tell them to always ask the parents first what is going on if possible. All children with autism are different and the circumstances also will be different. We as a community need to know that you are educated as best possible and wanting to help us as we so desperately need it at times.

Officer: "I will do that and I hope you have a better day".

I breathe a sigh of relief as he walks away and back to his car. Another meltdown survived. I wonder will he tell his fellow officers so they have just a glimpse into our world?

Today's trip did not turn out as above. We simply sat it out in the parking lot until it was ok to continue on our trip. I want to communicate however when you see that mom or grandmom or dad in their car trying to calm an upset child please do not judge or criticize or offer nasty suggestions on how to raise a child, simply think that perhaps that person is "Driving Under the Influence: Of Autism".

Thursday, October 3, 2013

I've come to the conclusion today that if I were stranded on a desert island with my son with autism, I would never be bored. I wouldn't have to think "gee, I wonder what's on TV?" because living with my son with autism is like having the TV on 24/7.

He loves to script. At this moment we are in the middle of the commercial for "The Muppet Movie". You get both the play by play of the movie or video tape and the trailers and commercials that accompany each.

Now, it's "Bear in the Big Blue House". The "channels" change at will. There seems to be no rhyme or reason to the changing of the channels, just whatever comes into his mind.

The voices are amazingly close to those of the characters, including the british accent of one of our favorites, "Kipper the Dog". Now the channel has changed to "Stuart Little".

I guess I should be thankful he's not into professional wrestling or monster trucks because not only do you get the "script" of the show, you get the sound effects. Whether it be a "crash" a "bang" a "boing" or the most dreaded by me, a "scream" they are all delivered with perfect timing to fit the script.

The hardest part is trying to teach him that the neighbors may not prefer to hear "The Rugrats" belted out at 10 at night. I've taken to shutting the windows lately to prevent the sound from lofting across the street. In the time it took me to just step outside to smoke a cigarette, we've changed from Lilo and Stitch, to the line in Rugrats Movie where Mrs. Pickles is in labor and the Dr says "alright Dee Dee, you can do it...push now". "Now on video" .

But sometimes he uses the script in realistic situations. I remember one day we had to go to the radiologist for an xray of his wrist. Killing time in the waiting room is not easy for a child with autism, and Joey began scripting from Spongebob. Across the room a distinguished looking gray haired gentleman sat reading the New York Times. Joey left his seat and climbed into the chair next to this man. "Excuse me sir" he said. "Oh no" I thought. I knew exactly what was coming.

"I hope my horrible ugliness won't be a distraction to you". He had delivered the "we're not ugly, we just stink" Spongebob and Patrick script to this man waiting for his own xray. I rushed over to take him away from this gentleman. I'm sure the man had no idea in you know where what this kid was talking about. He had played it out exactly as Spongebob did when he tapped the man in the seat beside him in the theatre on the shoulder.

As I wrap up this blog we are now on "Scooby Doo and The Cyber Chase" commercial. I know there are "behaviorist" explanations for why he does this. He is capable of having a brief conversation. It is not his preferred thing however. He would prefer that you participate in the scripts and god help you if you miss a word or get your lines out of order. His memory is incredible. There must be a way to use this skill in a more productive and possible vocational manner. I struggle with these questions daily.

But right now it is late and I need to find the "mute" button on this remote.